Friday, October 22, 2010

It may come as a relief to anyone who has ever driven with me to learn that this summer, at long last, I purchased a GPS.

If you have never driven with me, then I need to tell you up front that I am not writing with false modesty here. I will acknowledge that I have many talents, many gifts - however, a keen sense of direction is not among them.

My problem is worse than just having a poor sense of direction, though.

You see, I love road trips. I love driving to places I've never been just to see what's there. And I especially love being in the passenger seat, being in charge of changing the radio station and engaging the driver in conversation to pass the time. But I give the same warning to every driver I accompany on a road trip:

"Here's the thing," I say. "The thing is, I have no sense of direction. None. Zero. But if you ask me which way to go, I will give you an answer. I won't couch my response. I won't say, 'I think it might be this way,' or 'That way kind of looks familiar," and I will absolutely, certainly not say 'I don't know.' I will boldly and confidently respond 'Take a right' or 'Take a left' and I will sound so absolutely sure of myself that even though I've told you all this, you will take that right or left. And about 85% of the time, I will be wrong."

I say this. Truly, I do. I say it that clearly and that directly. And nearly every time, not long into the trip, the driver will pause at an intersection and say, "Do I turn here?" and I will say, boldly and confidently, "No, keep going straight." And then we will go anywhere from 50 yards to 50 miles out of our way before the driver decides to turn around and try again.

This is fact.

So, really, believe me when I tell you that it's in everyone's best interest that I've purchased a GPS.

Bud and I broke it in early this summer and we've both become big fans. Thanks to an episode of Curious George, Bud calls it our "auto navigator" and he wants it on at all times. At first, he seemed to think that it was kind of like the Wii. As we drove past the lake and the road edged the water, Bud coached from the back seat in the same tone he uses when he watches me try to walk the Wii tightrope: "You're doing great, Mom! Don't let the car fall in the water!" But now he seems to get the point of it and enjoys having the auto navigator tell us which way to go.

Of course, we don't always listen to the auto navigator. Sometimes it tells us to go one way, when we'd just prefer to go another. And magically, beautifully, instead of fighting us on it, the auto navigator simply just takes a virtual look around, recalibrates, and says, "Okay, well, now that we're here, how about if we try going this way?"

We used the GPS for the first time on a Friday in July, as Bud wrapped up his first week in his Extended School Year summer program. As we drove, following the encouraging electronic voice of our new auto-navigating friend as she pointed us in all the right directions, I thought about how nice it would be to have a GPS for parenting. I imagined myself punching in the destination "outburst managed effectively" and waiting mere seconds for the instrument to calculate my route to success. How nice it would be to move forward with the assurance that if I made a parenting misstep, a gentle voice would instantly redirect me: "When possible, make a legal U-turn."

I reminded myself that I was not alone in that desire - that most parents would love to have this kind of instrument - though perhaps parents of children with special needs would use them more often than most. I thought about how, in the absence of a parenting GPS, we special-needs parents try to find other kinds of road maps. We try to take direction from experienced guides - those who have travelled the roads before us with success and finesse.

And then I started to panic.

Am I doing the same thing on my blog that I do when I'm the passenger in a car?

Am I telling my parenting story with unwarranted confidence, leading unsuspecting parents down paths that are 50 yards or 50 miles out of their way?

Should I add a flashing neon disclaimer that scrolls across the top of my blog: "WARNING: I don't actually have any idea where I'm going here" or, simply, "Construction Vehicle - Do Not Follow"?

I was somewhat reassured when I reminded myself that when I'm feeling least confident, I tend to go on fewer road trips. In other words, when things with Bud are particularly tough and I really don't feel like I know what I'm doing, I don't usually write many blog posts.

And such was the case on that Friday as I drove towards home, the GPS seamlessly laying out the route I already knew so well. I considered how little I'd been posting to my blog, how little about our life I felt I could share, and how much I longed for a Magic GPS of Autism Parenting. I thought about how hard it was to know what to do in the face of escalating anxiety and aggression. I thought about how nervous I was that summer was upon us - summer, once my favorite season, now fraught with landmines disguised as long, unstructured, routine-free days.

My heart raced as fast as my brain as I thought about the weeks that had led up to the start of Bud's summer program - weeks full of e-mails and conversations that challenged me to take a stronger stand than I ever had before, that made me leave the safe haven of collaboration and step with false confidence into a land of contentiousness, as I tried to ward off a rerun of the previous summer and found myself for the very first time using phrases like "free appropriate public education," "entitled by law," and "due process hearing."

As we neared our house, my racing thoughts were interrupted by the calm, even voice of my new GPS auto-navigator, who gently reminded me that the left I was about to take was, indeed, my best alternative. The interruption changed my focus and made me consider how the parenting turns I'd made in recent weeks seemed to be playing out.

We had a good summer plan in place. It wasn't ideal - it wasn't identical to my original request - but it was a good, solid plan. It was, in fact, the best Extended School Year plan that Bud had ever had.

And Bud had just successfully wrapped up his first week of the Extended School Year. He'd made the transition beautifully. He'd started each school day happily - no arguing, no groaning, no long, tearful goodbyes at the door. He'd had great reports each day when his session had ended. And now, after a full week and a newly-established routine, he sat in the back seat as we headed home, humming along with the radio and talking back to the auto-navigator, happy and content.

Just then, we pulled into our driveway, and the calm, even voice of our auto-navigator said one last thing:

"You have arrived."

Startled, I looked at the screen. And there was the message, bright and glowing:

"You have arrived."

I almost burst into tears.

I had no idea how much I'd needed the validation - how much I needed to hear from a voice outside my own head that the risks I'd taken were paying off, that my judgment had not led my son 50 miles in the wrong direction, that despite my panic, we were moving toward our goal.

Certainly, this was one small stop on a very long journey. Clearly, it was not the hardest leg of the trip and we'd not taken the most complicated route. But in that moment, on that day, sitting in that driveway, the words of my new-found electronic friend meant everything to me.

We had arrived.

The summer program played out well for Bud. I don't think I've burned bridges with the school district. And now, as we look ahead to the next phase of our journey, we seem to be facing new landscapes with what looks to be rocky terrain.

I still wish I had a parenting GPS.

But I'll tell you this for sure: for the foreseeable future, I'll be using the GPS I do have to chart a lot of journeys home.

Thursday, October 21, 2010

This post originally appeared at Hopeful Parents on September 11, 2010.Some weeks ago, when I learned that I’d been assigned to write for Hopeful Parents on the eleventh day of every month, it occurred to me that I would be posting on the eleventh of September. September 11. I wondered how I would write an upbeat, positive post on such a tragic anniversary. To acknowledge the date would be somber; to ignore it, when I have been specifically designated THIS day to post, might seem disrespectful.

About a week ago, on a day when the stress of Bud’s transition to a new school year manifested in hard-to-manage behavior at home, it occurred to me that my posting date was fast approaching. I wondered how I would write an upbeat, positive post for Hopeful Parents when I was not feeling like a very hopeful parent. To acknowledge my frustration and self-doubt would be somber; to ignore it would be disrespectful to the mission of this site.

And that led me back to thinking about 9/11.

On that day, when the first plane hit the tower, Bud and I were dancing. We were in a Kindermusik class full of parents and toddlers. We were surrounded by baby laughs and mommy hugs, while hundreds of miles away, inconceivable tragedy was unfolding.

I think about those contrasting images often.

They are images that, through their contrast, capture my world view. It’s a world view that may have started to develop in my high school science class, because it seems to have its roots in Newtonian physics: To every action, there is an equal and opposite reaction.

In my own mind, it has become this: The universe seeks balance.

It’s a theme that plays out consistently in my life.

I look at pictures from Bud’s second birthday party, held four days after September 11, 2001. The faces on the adults are ashen, fixed in still-fresh shock and disbelief. And yet, there we were, gathered with joy, gathered in love, gathered because a two-year-old’s birthday mattered, despite the horror we were all still trying to process. We gathered to meet our grief with an equal and opposite reaction.

I think about Bud’s birth itself – the birth in which his twin brother was stillborn. I think about the hours and days that followed – hours and days of profound sadness, made livable - made powerfully joyful - by the healthy baby boy I held in my arms. Equal and opposite.

I think it’s the way that each of us processes the balance – the way we frame the moments and events in our lives that stand together in juxtaposition – that really defines our experience. I could, I suppose, reflect on my life and feel cheated - angry that the sorrow of x diminished the joy of y. Instead, I reflect on my life and feel fortunate - grateful that the joy of y sustained me through the sorrow of x.

So, I cling to my memories of the earliest moments of 9/11 - those moments in which something was stolen from us that we’ll never reclaim - and I remember the dancing. I remember the joy – and I believe that the people who were dancing, who were laughing, who were kissing, who were living with compassion and kindness at that first terrible moment of impact, created an equal and opposite force that kept us all moving forward, that allowed us to preserve something that can never be stolen.

It’s the same world view that keeps me moving forward through Bud’s darkest days of anxiety and aggression – because as challenging as his behavior can be, as powerless as I can feel in the face of it, I know without question that soon we will experience equal and opposite progress – equal and opposite joy.

The universe seeks balance. Better days are coming. And there’s nothing more hopeful than that.

Wednesday, October 20, 2010

I've been thinking lately about the very first, honest-to-goodness, back-and-forth conversation that I ever had with Bud. I can recount it to you verbatim, because it was such a big moment that I immediately captured it in writing:

Me: Let's go get your coat.

Bud: Outside?

Me: Yes, we're going outside.

Bud (getting a ball): Ball.

Me: No, we can't play ball outside today. It's too cold.

Bud: Slip-ee?

Me: Yes, it's slippery, too. We're going bye-bye in the car.

Bud: No boots.

Me: No, you don't need boots in the car.

Bud was just over two-and-a-half, and he wasn't speaking much. There were occasional words and phrases - mostly echolalia, though I didn't really know it at the time. He was already in early intervention, but he had not yet been screened for autism - though the possibility of it may have begun to creep onto my radar.

But then: conversation! I was certain at the time that it was the start of what would become an explosion in language development - a sign that, within months, I would chuckle and wonder why I'd ever been worried. It was the thing that I pointed to - the thing I clung to - as I shaped a world view in which my child did not have a disability. Yes, I thought, his speech is delayed. But we have conversation!

And we did have conversation - one conversation - when he was two-and-a-half. The next one might have been a year later; it might have been much later than that. I'm not sure, because that one was not captured in his baby book.

I've been thinking about how that one conversation shaped my mindset in those early days. It may have held me back from really recognizing what was going on with my son's development - may have kept me longer in denial, may have made me less likely to seek additional support. But I think it played another role, too. I think it kept me focused on Bud's potential. It made me see him not as a child who couldn't converse, but simply as a child who didn't converse. There's a big difference there. With the former mindset, I think I would have viewed him as a child with limitations; with the latter, I saw him as a child facing obstacles. It helped me to focus on helping Bud master the obstacle course, rather than making it okay for him to sit out the race.

And as I think about that, I think about all of the attention paid in the popular press to the "early signs" of autism - the behaviors that indicate that your child might have the disability. It occurs to me that we might want to start giving equal attention to a different type of early sign - the behaviors that indicate that your child with autism might have tremendous potential - tremendous ability. Even if you only see those behaviors briefly. Even if you only see them once.

Bud and I have frequent conversation these days. They're different from the conversations that I imagine most parents have with their ten-year-olds. But now, as when he was two-and-a-half, our conversations are full of moments - brief illuminations - indications that he is capable of so much more and that he is constantly reaching for his capacity.

Tuesday, October 19, 2010

You know how when you take a new job, you have a meeting with your employer after 90 days to see how things are working out? Well, I've been having some check-in meetings with myself now that I'm three months into my gig as a contributor to Hopeful Parents. I've stuck to the typical 90-day review agenda - 1) what's going well, 2) what's not going well, and 3) what changes need to be made - and in the process, I've realized a few things.

Lots of things are going well. I love Hopeful Parents and I love being a part of such a wonderful community of parents and writers. I like helping to direct new readers there. I like having a deadline that forces me to write something at least once a month. I've been introduced to some great new parents and I've broadened my perspective on raising a child with special needs.

Some things are not going as well, though. The main issue is this: If you're a writer, you may understand what I mean when I say that sometimes writing feels like parenting. You start with raw material - a blank page - and you breathe life into it. You shape it, assess it, redirect it, and then marvel as it begins to take on a life of its own. Your essays - your stories - your blog posts - begin to feel like your children.

Well, these days, with my Hopeful Parents posting, I feel like I've randomly selected a few of my children and shipped them off to go live with another family. Don't get me wrong - it's a nice family; it's a lovely family. But I miss having my kids at home.

I've also discovered a fascinating trend in readership - or, in readership as evidenced by comments, at any rate. There's a significant subset of people who often comment here, but don't comment there. They contact me by e-mail instead or they make a comment related to my Hopeful Parents post on an unrelated post here. Some, I think, just don't comment at all. I've been wondering why this is and I've developed two theories:

First, there's a lot of coming and going over at Hopeful Parents. A new kid moves in every twelve hours or so. So, you might get introduced to my kid, leave for a while, and then return to continue the conversation, only to find that several new kids are sitting in his place. You could go searching for my kid, but really, time is short, and it's just easier to wait for another opportunity to chat.

That dynamic is less true over here, where life is lived at a much slower pace and my kids may linger at the table, helping themselves to one more piece of pie, for days or weeks before anyone else sits down with them. Here, there's a lot more space - physically and psychologically - for chatting.

My second theory is this: As I've said before, I think (and hope) that when people visit this blog, they feel like they're sitting down in a virtual living room with a steaming cup of coffee and a few good friends. I think the living room environment itself invites conversation. But I think, maybe, that commenting over at Hopeful Parents makes people feel like they're dropping in unannounced at my office. They never know if it's a good time and they're afraid they might be interrupting something - so they make their visits brief and they try to be unobtrusive.

So, that's the overview of my 90-day review. On balance, things are going well, but I've decided to take my cue from Jess at A Diary of a Mom and make one small change. I'll still ship my kids off once a month to the loving family at Hopeful Parents and I'll let them spend some time there on their own. I hope you'll visit them to see how they're doing. And then, after a little time has passed and I start missing them too much, I'll bring them home and reprint them here. They can keep a bag a Hopeful Parents and spend as much time there as they like. But I hope they'll always feel at home here.

Friday, October 15, 2010

First, a bit of background. It's been a rough couple of days around here. A major storm blew into our area yesterday and the low pressure system that accompanied it wreaked havoc on Bud's system, the way that low pressure systems often do. Coincidentally, Bud had an appointment with the doctor who does his medication management yesterday, so the doctor got to see first-hand the extreme behavior that these kinds of systems can cause. We were able to talk through some strategies regarding the timing and dose of medications when these situations arise.

But, today, the storm continued to rage outside my house and inside my boy, and though I had a plan for medication (which was ultimately successful, I think), I knew early this morning that I would not be able to send him to school today. Instead, we had a sort of home-spun homeschool day, just the two of us, for better or worse (and, frankly, we experienced a little bit of both).

It's been exhausting - and I imagine it's been twice as hard on Bud as it's been on me. And it's been frightening. When I see extremes in behavior, there is always some small part of me that fears it's a shadow of things to come - that this is not merely a blip on the radar caused by barometric pressure, but is, in fact, an emerging issue.

It was right in the middle of the day today that I remembered an e-mail I'd received a couple of days ago. It was titled "Hope?" and it was from Sharon, the mom of a young man with Aspergers. She'd attached a video clip and said she was sending it to remind me to never give up because the fight is worth it. I couldn't open the video link on the computer I was using when I'd opened my mail, so I'd saved it in my inbox until I could watch it from home.

I clicked the link today, and I "met" Sharon and her son Scott. The video was made when he was 21, following a period of about seven years when he was so uncomfortable around people that he rarely left his home.

But on the day this video was made, Scott took a risk and left home. He did it, he says, because "a lot of people have a lot of pre-judgment against autistic people and I'm here to try to break it."

And break it, he did.

It was just what I needed to see today - a day when Bud and I weren't able to leave our house, a day that didn't seem full of hope.

Monday, October 11, 2010

It's a good thing that I signed on as a contributing writer for Hopeful Parents. That commitment has given me a deadline for posting every month - and in recent months, the Hopeful Parents deadline has been doubling my output here.

So far, this month is no exception.

I do want to thank those of you who have e-mailed me privately. No, nothing is wrong, and no, I'm not abandoning this blog. It's just been hectic around here as both Bud and I adjust to the routine of a new academic year. In addition to my full-time job at the college, I'm also teaching two online writing classes to students who are studying in Europe. I'm working on an outside writing project. And on top of all that, I'm reading The Girl With the Dragon Tattoo - which, somehow, keeps finding itself on the top of my "to do" list despite the many other things that need to be done.

So, the Hopeful Parents deadline has been good for me. Today is the 11th - which means I have another post up. It's a post that has been languishing in draft form over here for months - one that I started writing early this summer, after I bought my first GPS.

If you read it, you'll see that I advise you never to take direction from me. But, really, you can trust me on this one: If you want to find it, just click here.

Friday, October 08, 2010

I've been thinking recently about the idea of a "spectrum" as it relates to autism. I mean, I know that when we talk about the "autism spectrum," we're talking about a range of degrees to which a person can be affected by the characteristics that define the diagnosis. When we say "autism spectrum," we're generally talking about a spectrum of ability that ranges from "high functioning" (whatever that is) to "low functioning" (whatever that is).

But lately I've been thinking about the other spectrums that seem to come along with autism. I was talking not long ago to Bud's former teacher, the incomparable Ms. Walker, who told me that she often thought about working with children with autism by looking at the number line that runs across the wall of her classroom. When she works with a child with, say, dyslexia, she can usually predict that on any given day, that child is going to walk into her room with a level of challenge that falls within a particular range on her imaginary number line - let's say, somewhere between 40 and 60. But, she said, with Bud, she knew that on any given day, he might enter at any point on the number-line of challenge. One day, he might walk in at negative 150. The next, he might be at positive 125. Each day stood as a discrete point on the number line, seemingly unconnected to either the day that came before or the day that would follow. Her strategies for intervention also had to run a spectrum, she learned, because a strategy that was powerfully effective one day, might be woefully inadequate the next.

I thought about another kind of "autism spectrum" a couple of weeks ago, as we celebrated Bud's eleventh birthday. All day, I walked around with a single line from the Sting song "All Four Seasons" running through my head: "That's my baby. She can be all four seasons in one day..."

It wasn't until after I put Bud to bed that night that I had time to reflect on the day and on why that particular song kept occurring to me. I thought about the ever-changing seasons of Bud's behavior over the course of the day - a day that he'd been anticipating for months. Those seasons ran a full spectrum, cycling rapidly from sunny and bright, to stormy and imposing, to placid and serene, and back to glorious and sparkling.

I thought, also, about the seasons of life - the spectrum of stages we all go through - and the way that most of progress through those seasons in a linear way, embracing the one ahead of us as we let the one behind us fall away. But Bud does not seem to be progressing through the developmental stages in life in quite the same linear way. His development, it seems, is more fragmented, with different aspects of it moving at different paces, making him seem at once so innocent and childlike, so angsty and preteen, and so grown-up and mature.

I thought about his multi-stage, full spectrum development as I looked at his birthday presents - each of them treasured in its own way. Among them, I saw:

A Teletubbies board book, designed for chubby toddler hands;

Teletubbies colorforms, for ages 3 and up;

A DVD and a set of stuffed characters from the PBS preschool show Dinosaur Train;

Chapter books from the PBS Kids show Martha Speaks, geared to children in the early elementary grades;

An amazon.com gift card - just right to meet the independent spirit of the 'tween demographic in which he finds himself age-wise (and which he used to by another Teletubbies board book and two Caillou VHS tapes, which he doesn't watch, but which he needed to complete his collection);

A boombox with an iPod dock, probably a big seller with teenagers, which he uses to play his country music - most definitely popular among college students;

A set of DVDs from the first season of the National Geographic series Be the Creature, featuring the Kratt brothers, formerly of the PBS Kids show Zoboomafoo, and now in a series oriented to teens and adults;

A banjo, perfect for plucking out some homespun bluegrass - which, though certainly appropriate for all ages, may be most popular with the grandpa set.